John - Interview 26

Age at interview: 58

Age at diagnosis: 52

Brief Outline:

John was diagnosed with acute promyelocytic leukaemia (a type of acute myeloid leukaemia) after repeated viral infections. He was treated with ATRA (All Trans-Retinoic Acid) and 4 courses of chemotherapy as part of a clinical trial. He is in remission.

Background:

John is retired. He is married with no children. Ethnic background: White British.

More about me...

John had repeated viral infections that eventually led to his GP taking a blood test. He received the leukaemia diagnosis the same day and was admitted to an isolation ward in hospital two days later. He had a central line fitted and was invited to join a clinical trial but was not initially given all the information he needed to decide. Eventually he agreed and started on chemotherapy. He was also given a course of ATRA (All Trans-Retinoic Acid) tablets, derived from vitamin A, which is only used in treating the type of acute myeloid leukaemia he had, called acute promyelocytic leukaemia (APL). His peripheral stem cells were also harvested in case he needed a transplant in future.

During John’s first cycle of chemotherapy he ate very little due to sickness and lack of appetite for hospital food. He lost his hair and the lining of his mouth became inflamed. He was surprised that the side effects didn’t happen immediately and wondered whether the treatment was working and whether he might die. Having been nervous at the start of his treatment, John gradually learned to take things more in his stride and became used to the hospital regime. He found it important to relax and sleep when he needed to and to personalise his room with his belongings. He was glad that the hospital was near his home so family and friends could visit easily. However, he had to refrain from seeing his twin brother due to infection risk because of the similarity of their immune systems.

 

Over six months John had four courses of treatment out of a possible six under the terms of the trial. The first course lasted seven weeks, the others five, with a few days off in between when he was allowed home. Remission was confirmed after the first course of chemotherapy. His central line was replaced several times during treatment due to infection, plus he developed C-Diff during the third course.

 

After recovering at home for another six months John returned to work but soon decided to retire to give him more time with family and to do the things he really wanted to. With the help of one of his consultants, he formed a support group to help other patients at his hospital but it folded after three years due to a lack of members.

John describes having a bone marrow sample taken. The skill of the doctors doing the test varied and so did the pain. He tried to ensure that the doctor waited until the anaesthetic had taken effect.

So have you had lots of bone marrow biopsies done?

 

Yeah, there were lots, and some doctors know how to do it without causing a great deal of pain and some are insensitive to pain. And the only way you can try and make it a better experience is to talk to them before they do it and make sure that they allow the anaesthetic enough time to set off, because some doctors want to get on with it as soon as they can. They’re busy, they need to get the biopsy taken. And I always found it was far better to delay the process a little bit, slow them down a little bit and found that I always got a better result. I didn’t get the pain.

 

Can you describe the pain or, take me through the procedure the first time you had it so you didn’t know what to expect. The bone marrow biopsy I’m talking about.

 

Yeah. The procedure is that you’re asked to lay on your side and you’re asked to curl up into a sort of fetal position, and this is so that I think your pelvic bones are prominent. The doctor then feels for a point somewhere in your pelvic bone where they want to take a sample. They then give you the local anaesthetic. Then having really good memories about where this point is, they then go back to it with a biopsy needle, which is a lot bigger, which luckily you don’t see because it’s round the back. And that takes a bit of time to insert and then once they’ve inserted that then there’s another needle goes inside it, or another thing that goes inside it, which they use to pull out the bone marrow, which normally takes a bit of time and it’s normally like drawing a cork out of a bottle. And the feeling I had was a feeling like being in an elevator going down very quickly and a kind of feeling of being drawn at the same time. And usually they would say, “Haven’t got enough sample here”, or, “I’ve got this bit of bone stuck in here as well”, or… And they’d have another go.

 

Like at a lot of things in hospital, the people who do a procedure most often become expert at it. And doctors who were good at doing biopsies were those who had done them frequently. So kind of woe betide you if you get somebody who’s just joined and hasn’t had much practice because it can be very, very painful. But you just have to bear it because it’s the only way they’re going to tell you if there’s an improvement or not.

John had used complementary approaches that helped him to relax but was against herbal medicines because he believed that if they worked the NHS would offer them as part of conventional treatment.

Have you thought about or used any complementary remedies to do with your leukaemia?

 

No. I have this theory which is that if it was working the health service would use it as a main course of treatment. If they don’t use it it’s because it doesn’t work. I know that sounds really sceptical.

 

Or because they don’t know whether it works.

 

Well, no I don’t go along with that line. My view is that there’s enough herbal medicine in the world. There’s enough other countries that depend on herbal medicine and other sources of treatment that if there was a source of treatment which is found to be working our health service wouldn’t be that perverse that they would choose not to use it simply because it came from India or China or was associated with a herb or something. So yeah, I think it’s the wrong place to go.

 

However, I do believe in alternative therapies. So I believe in things like massage, reflexology, sound, other things that kind of calm your emotion or stimulate your emotion, because I think they have a really quite important part to play, not in terms of treating the disease but in terms of helping you manage it and live with it. So alternative therapies yes, but alternative kind of drugs and stuff, no.

 

Okay. So did you use any of those therapies?

 

I certainly used, I used I suppose three, mainly, I think I mentioned them before. One was the relaxation thing, which was to be able to get to relax. The second was, this doesn’t sound like a therapy but it is, of getting to know how and when to sleep and how to sleep well. And that really is very therapeutic. And the third sort of alternative therapy was things like kind of reading or distraction therapy.

John returned to work for a time but in view of his uncertain future health he decided to retire early to do the things he wanted to do and spend more time with loved ones.

I went back to work, was only there for a short period of time because things move on, in the period I’d been away was about a year, and decided to retire. There were no guarantees about my health and about the leukaemia not returning, so what I decided to do was to live my life for myself, that I’d live myself. I’d lived my life for others for a long period of time and it was time now to get the best out of whatever time there was. And I think that’s probably the best decision I’ve made, because it was of benefit to me but benefit for the people I love as well because we had more time together. And there were things that we could get on with, whereas I’d been dedicated, focused at work for 20 years as a housing manager and 10 years as a regeneration officer. And I found that way of looking at life really, really pleasant.

Support from his wife was very important to John during his leukaemia; she showed a great deal of empathy, love and feeling, although they had hidden the true extent of their feelings from each other.

In terms of how she’s coped, I hope she’s coped very well. I hope that the way I coped with it was able to help her cope. Not to say that any of my coping was artificial, to try and make her deal with the situation better. So together we kind of coped well with it. From time to time there’s some irritability and I sort of put it down to the fact that it was an intervention coming from somebody who wasn’t in the room all the time. I recently discovered that growth factor actually makes you irritable so I now put it down to that.

 

But yes, it’s a very difficult time. She’s seeing somebody that she loves looking awful, although as I say, I only saw it once. And she knows that you’re going through a horrendous disease, that you’re going through barbaric treatment. And there’s a great deal of empathy and love and feeling there. So I didn’t let her show how bad it was for me and then she didn’t let me show how bad it was for her. And we, I think just showed each other how we could cope with the different sides of it. But yeah, I mean you need some support. And that’s a big lesson to learn that when you’re in these situations you need to seek and have support.

 

So she was a good support to you, was she?

 

Yeah, I think so. I think we were able to talk about it. Where things needed to be planned, we were able to plan them. Where things that I needed to be reminded of things I was reminded. When I needed to be given my own space on my own bed I was given it. When I’d had enough of the day I could just, even with her in the room, just say, “Oh well, I want to go to bed to sleep now for a couple of hours.” And she would stay and I’d be asleep. And that was wonderfully reassuring that I could sleep, 1, because I had somebody there kind of looking after my interests while I was not around, but secondly, that we could do that.

John felt daunted by the prospect of having a central line fitted as he was already anxious from being told he had leukaemia and needed chemotherapy and had never been in hospital before.

And the second thing was getting a Hickman or central line fitted. The doctor said that if they put chemotherapy through my normal veins, and the other things such as platelets and other transfusions, they would eventually show the effect of continually being used. So what they normally do for patients is to give them a central line which goes through the neck and in to their chest. And that leaves you with a couple of tapers with valves on the outside of your chest. It leaves you with a scar so that everybody knows that you’ve had leukaemia or one of those things. And that was interesting because that was treated by the nursing staff and doctors as a matter of fact incident, something that would happen easily. And for somebody who’d not been in an operating theatre, somebody who’d not been asked if they’d wanted anaesthetic or a sedative, simply sedated, it was quite unusual.

 

But also you become very health alert when you’re told you’ve got leukaemia and it makes you alert to everything else which is happening in the hospital. You’re basically looking after your body and looking after what your body might receive in terms of infection, so you’re very very careful and very concerned.

 

So I was sort of whisked off to an operating theatre where they fitted the Hickman line. And again there’s a sort of a nice casual and informal approach but that sometimes ignores the fact that you actually are having a procedure which is dangerous in itself. And so in a state of high anxiety that you’re in hospital, you’re being treated for leukaemia, you’re going to have chemotherapy, there’s another dose of high anxiety, which is you’re having a central line fitted. And perhaps patients aren’t prepared for that as well as they should be.

John quickly got into the rhythm of hospital life but tried to vary the routine where possible to suit how he felt.

In terms of the treatment, the courses are different because combinations of chemotherapy are different and your reactions are different. But you do get into the pattern of hospital life and you get into the pattern of your treatment, and you get into the pattern of seeing people and waking up at a certain time, sleeping at a certain time. And it’s a hospital regimen that you’re getting involved in. It’s important to know that you can change that regimen if you want and that if you don’t feel particularly well because of treatment then it’s worth actually saying, “Can I possibly go without breakfast and have it later?”, or, “Can I stay in bed a bit longer?”, or, “Can I relax?”

John brought lots of personal possessions into hospital to make his room more homely.

What I found was the need to personalise the room I was in and to bring in things that I thought would make my time in hospital better. So the things that I brought in were kind of things like' a new pillow, because the pillow in the hospital was terrible, your own pillows are far better; a small fridge, which was to keep things cold; a microwave so that I could cook stuff, so when I felt hungry that I had something I could eat as I wanted it and have the food I wanted; and a stereo system and a TV; and games and books; and kind of cards and things that people had sent in.

 

It was important to make it my home because I’m living in it, as opposed to dying in it. It has to be done with the hospital’s appreciation and understanding. And I think the difficulty is that quite often that isn’t something they want to achieve or are willing to put a lot of effort into achieving for the patient, but it’s critical in terms of living there. And assuming that it’s recognised that you’ve got a life threatening illness, it seems to me abhorrent that people don’t understand that in the last few days of your life, if that’s what’s going to happen, that you should be in a nice place surrounded by nice things that are to do with you. But that was when I was in hospital six years ago and I don’t think you’re allowed to take your own fridges in now, and I don’t think you’re allowed to take your own microwave in. So things have gone forward but they also seem to have gone backwards.

John took tretinoin (ATRA) tablets alongside chemotherapy at the start of his treatment for acute promyelocytic leukaemia; he was unaware of any side-effects.

One of the first things they give you is called ATRA (tretinoin), and those are tablets and again they don’t appear to have any side-effects except they beat up abnormal white blood cells. And what they really do is they clear them out of your system. Your system is being smothered with a mass of abnormal cells which is changing the way that you cope with your immune system and so on. And what it does is it clears all those abnormal cells which should have died, it encourages them to leave, which is good. Whether or not the ATRA has a more major effect in treatment I don’t know, but certainly it was something that I was given. But I can remember on two or three occasions having to remind people that I had to be given them.

 

So did you have that in every course of your treatment or was that just at the beginning or what?

 

That was just at the beginning. I think there’s a certain amount of ATRA that they can give you, they don’t over do it. But that was that. It was just like I suppose taking an aspirin or something, it was just another tablet to take but it was an important tablet to take. Certainly when I read the protocol it clearly identified that ATRA was something that had to be part of this.

John noticed that he spent little money during his illness so his reduced income was not a worry. He regrets not having known that he might be eligible for a disabled parking permit.

Can you talk to me about financial implications? You were away from work for a year.

 

Well, I was very lucky to be paid on full pay for six months and then half pay for a period, which worked out okay because I eventually ended up with more money than I’d had when I was at work because I didn’t really spend much money when I was in hospital. And I was out of hospital for such short periods that I’d never needed a lot to be bought. So it kind of worked, economically it worked okay but I can understand for a lot of people it really is a problem. So I didn’t worry about money. But to some extent the minute I was diagnosed and going into hospital and going to be there for a while, I stopped worrying about anything else. I stopped worrying about work and I stopped worrying about other things. And I found that was the best way to deal with it.

 

So did you claim any state benefits or you didn’t need to?

 

I didn’t claim any state benefits. The only thing I regret not getting was a disabled sticker for the car. And that was simply because when I discussed it with my GP he never seemed to understand that there was a possibility of getting one. Whereas a lot of my friends who also were patients had had disabled stickers and it was terribly convenient in terms of the ability to go backwards and forwards to hospital and visit for their relatives.